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Involvement of underserved communities in paediatric genomic testing
- Dr Shivani SekarEast and North Hertfordshire NHS Trust
Key points
- An East of England team identified barriers to underserved communities being involved in paediatric genomic testing, and possible solutions.
- There are challenges to involvement at every stage of the patient pathway, from referral and consenting to participation and research reporting.
- Researchers should report the demographic characteristics of their populations so that this can be analysed further.
Dr Shivani Sekar, East and North Hertfordshire NHS Trust, provides insights into the involvement of underserved communities in paediatric genomic testing, as part of an East of England research team. The discussion highlights the barriers faced by these communities at every stage of the patient pathway; from referral and consent to participation in genomic testing and research reporting. Dr Sekar emphasises the importance of reporting demographic characteristics of study populations to better analyse and address these barriers. She encourages leveraging identified solutions to improve participation and ensure that genomic testing and research are accessible and inclusive for all children and families. This interview took place at the RCPCH conference 2025 in Glasgow, Scotland.
Read the transcript
Automatic transcript, lightly edited for readability. It may contain errors, so check it against the video before quoting.
So I've worked as part of an East of England team looking at the involvement of underserved communities in genomic testing and paediatrics. So we've basically identified what the barriers are to these underserved communities being involved and tried to identify solutions to them as well.
The main thing that we found is that there are challenges to their involvement at every stage of the patient pathway, and that's from referral to consenting, participation in genomic testing programmes and with research reporting. And our key messages to people looking at genomic testing research as well would be to report demographic characteristics of their populations so that we can analyse this further. Think about the barriers facing patients when they are trying to encourage participation in genomic testing research as well, and try and leverage the solutions that we've identified as well to try and improve this.
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Cite this video
Dr Shivani Sekar. “Involvement of underserved communities in paediatric genomic testing.” The Paediatric Video Journal, 22 June 2025. https://paediatricvj.com/videos/involvement-of-underserved-communities-in-paediatric-genomic-sekar/
This interview is educational content intended for healthcare professionals and is not medical advice. Views expressed are those of the speaker. © The Paediatric Video Journal. All rights reserved.